Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 34
Filtrar
Más filtros

Banco de datos
País/Región como asunto
Tipo del documento
Intervalo de año de publicación
1.
Palliat Support Care ; : 1-7, 2023 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-37606295

RESUMEN

OBJECTIVES: This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development. METHODS: Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer. RESULTS: Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs. SIGNIFICANCE OF RESULTS: Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.

2.
Psychooncology ; 31(7): 1212-1220, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-35218278

RESUMEN

OBJECTIVE: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS). METHOD: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI). RESULTS: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (ß = -0.11, p < 0.001), as well as cancer openness and avoidance (ß = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (ß = 0.08, p < 0.01) and SS (ß = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (ß = 0.71, p < 0.05). CONCLUSIONS: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.


Asunto(s)
Carga del Cuidador , Comunicación , Neoplasias Hematológicas , Relaciones Interpersonales , Adulto , Hijos Adultos , Cuidadores , Familia , Neoplasias Hematológicas/terapia , Humanos , Apoyo Social , Encuestas y Cuestionarios
3.
Palliat Support Care ; 20(1): 22-29, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-33890563

RESUMEN

OBJECTIVES: The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. METHODS: Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. RESULTS: Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. SIGNIFICANCE OF RESULTS: Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.


Asunto(s)
Cuidadores , Neoplasias , Adulto , Hijos Adultos , Anciano , Cuidadores/psicología , Familia/psicología , Humanos , Longevidad , Persona de Mediana Edad , Incertidumbre
4.
Support Care Cancer ; 29(6): 3069-3076, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-33051829

RESUMEN

PURPOSE: Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. METHODS: We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. RESULTS: Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. CONCLUSIONS: Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.


Asunto(s)
Cuidadores/psicología , Familia/psicología , Neoplasias Hematológicas/psicología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad
5.
J Cancer Educ ; 36(5): 1039-1044, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-32157570

RESUMEN

Participation in cancer clinical trials (CCTs) is critical to improving cancer treatments and quality of care. However, rates of patient participation remain low. Research has shown that a trusted physician recommendation is an important influence on patients' decisions to enroll in a CCT. Improving primary care providers' (PCPs') knowledge, attitudes, and beliefs about CCTs is a promising potential path for improving CCT participation. The aim of this pilot study was to test the effect of an online educational course for PCPs about clinical trials on primary care providers' knowledge, attitudes and beliefs, and behavior. Forty-one PCPs in the New York City area participated in a 1-h online training session on cancer clinical trials. These PCPs had self-selected to complete the training in a previous survey. The objectives of the training module were to (1) educate the PCPs about clinical trials, with a focus on overcoming misconceptions; and (2) discuss roles of PCPs in partnering with oncologists to help patients gain access to clinical trials. The training module included didactics, audio excerpts, and case descriptions. Participants completed a pre-test immediately before taking the course, a post-test immediately after taking the course, and a 3-month post-course survey. All three assessments included a general T/F knowledge test, a 7-item attitude/belief scale, and a knowledge test focused specifically on local resources and access for clinical trials. Forty-one PCPs completed the module and the pre-post course surveys. Eighty percent (33/41) also completed the 3-month post-course survey. General knowledge and local knowledge increased significantly (p < .05) from pre- to post-course. At 3 months post-training, both general and local knowledge scores remained significantly increased from baseline. For those who completed the 3-month post-course survey, attitudes and beliefs increased significantly from pre- to post-course, but this change was not sustained at 3 months post-training. At 3 months post-training, 52% of the PCPs who had an interaction with a recently diagnosed cancer patient reported speaking with patients about CCTs as a result of the training. A brief online course showed significant and sustained improvement in PCPs' general and local knowledge about cancer clinical trials, which translated into self-reported behavior change. Future dissemination of the course and further research into its impact are important next steps.


Asunto(s)
Neoplasias , Médicos de Atención Primaria , Actitud del Personal de Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Neoplasias/terapia , Proyectos Piloto , Encuestas y Cuestionarios
6.
Clin Trials ; 14(5): 518-525, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28693389

RESUMEN

BACKGROUND/AIMS: Cancer clinical trials give patients access to state-of-the-art treatments and facilitate the translation of findings into mainstream clinical care. However, patients from racial and ethnic minority groups remain underrepresented in clinical trials. Primary care physicians are a trusted source of information for patients, yet their role in decision-making about cancer treatment and referrals to trial participation has received little attention. The aim of this study was to determine physicians' knowledge, attitudes, and beliefs about cancer clinical trials, their experience with trials, and their interest in appropriate training about trials. METHODS: A total of 613 physicians in the New York City area primarily serving patients from ethnic and racial minority groups were invited via email to participate in a 20-min online survey. Physicians were asked about their patient population, trial knowledge and attitudes, interest in training, and personal demographics. Using calculated scale variables, we used descriptive statistical analyses to better understand physicians' knowledge, attitudes, and beliefs about trials. RESULTS: A total of 127 physicians completed the survey. Overall, they had low knowledge about and little experience with trials. However, they generally had positive attitudes toward trials, with 41.4% indicating a strong interest in learning more about their role in trials, and 35.7% indicating that they might be interested. Results suggest that Black and Latino physicians and those with more positive attitudes and beliefs were more likely to be interested in future training opportunities. CONCLUSION: Primary care physicians may be an important group to target in trying to improve cancer clinical trial participation among minority patients. Future work should explore methods of educational intervention for such interested providers.


Asunto(s)
Actitud del Personal de Salud , Ensayos Clínicos como Asunto , Conocimientos, Actitudes y Práctica en Salud , Neoplasias/terapia , Médicos de Atención Primaria/psicología , Adulto , Negro o Afroamericano/psicología , Negro o Afroamericano/estadística & datos numéricos , Asiático/psicología , Asiático/estadística & datos numéricos , Femenino , Hispánicos o Latinos/psicología , Hispánicos o Latinos/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Ciudad de Nueva York , Investigación Cualitativa , Derivación y Consulta , Encuestas y Cuestionarios , Población Blanca/psicología , Población Blanca/estadística & datos numéricos
7.
Med Care ; 54(4): 380-5, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26759984

RESUMEN

BACKGROUND: The high prices of chronic myeloid leukemia (CML) therapy are well recognized, but less discussion has focused on the value of health care spending on the disease. This study examined whether the added costs have been "worth" the benefits among older adults with CML. MATERIALS AND METHODS: We analyzed trends in health care costs and survival over time of 2164 CML patients over age 65 using the Surveillance, Epidemiology and End Results-Medicare-linked database. We estimated life expectancy over a 15-year duration after diagnosis using a Weibull survival model and projected the corresponding costs using a 2-part model, adjusting for patient characteristics. We estimated population-level survival, total health care costs, and incremental cost-effectiveness ratios (expressed as cost per life year gained) over the period of 1995-2007. RESULTS: We found that therapeutic improvements in the treatment of CML have been associated with survival gains among older adults. Mean life expectancy was 2.2 years in 1995 and increased to 4.2 years in 2007. During the same timeframe, CML care costs have increased, from $127,000 in 1995 to $278,000 in 2007 (2010 dollars), mostly due to increasing tyrosine kinase inhibitor costs. The aggregated incremental cost-effectiveness ratio was $74,000/life year gained. CONCLUSIONS: Our findings showed that, despite high costs, CML care may provide reasonable value for money among older patients between 1995-2007. Our study sheds light on the value of health care spending on CML by considering both the costs and the benefits. Future research should investigate strategies to improve treatment adherence to maximize the value of CML care.


Asunto(s)
Análisis Costo-Beneficio , Costos de la Atención en Salud/estadística & datos numéricos , Leucemia Mielógena Crónica BCR-ABL Positiva/economía , Leucemia Mielógena Crónica BCR-ABL Positiva/mortalidad , Leucemia Mielógena Crónica BCR-ABL Positiva/terapia , Anciano , Anciano de 80 o más Años , Antineoplásicos/economía , Antineoplásicos/uso terapéutico , Femenino , Humanos , Estimación de Kaplan-Meier , Esperanza de Vida/tendencias , Masculino , Medicare/estadística & datos numéricos , Años de Vida Ajustados por Calidad de Vida , Programa de VERF/estadística & datos numéricos , Estados Unidos
8.
J Cancer Educ ; 30(1): 152-7, 2015 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-24805229

RESUMEN

Primary Care Providers (PCPs) can be instrumental in helping to prepare patients for referral to cancer treatment. It has been suggested that PCPs can have an important impact on priming patients about the possibility of receiving care within a cancer treatment clinical trial (CCT). However, little is understood about how to effectively engage primary care providers in educating patients about trials. Data were collected as part of two qualitative research projects about primary care providers' role in referral to treatment and to CCTs. Participants were 27 PCPs who agreed to take part in qualitative face-to-face or telephone interviews and serve predominantly underserved, minority populations. Interviews identified a number of factors influencing referral to oncologists, including patients' insurance coverage, location and proximity to treatment facilities, and the strength of ongoing relationships with and/or previous experience with a specialist. PCPs overwhelmingly expressed disinterest in discussing any treatment options, including CCTs. Misconceptions about quality of care received through trials were also common, presenting a deterrent to discussion. PCPs need targeted, evidence-based educational interventions to appropriately address their concerns about cancer clinical trials, enhance provider communication skills, and alter patient referral behavior. Steps must also be taken to strengthen communication between oncologists and referring PCPs.


Asunto(s)
Actitud del Personal de Salud , Ensayos Clínicos como Asunto/estadística & datos numéricos , Comunicación , Conocimientos, Actitudes y Práctica en Salud , Neoplasias/prevención & control , Médicos de Atención Primaria/educación , Pautas de la Práctica en Medicina/normas , Defensa del Consumidor , Cultura , Humanos , Participación del Paciente , Rol del Médico , Investigación Cualitativa , Derivación y Consulta
9.
Health Promot Pract ; 16(1): 46-54, 2015 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-24700166

RESUMEN

Southern rural and underserved counties have high proportions of individuals with increased mortality for cervical and breast cancers. To improve the integration of behavioral research into practice, the dissemination and implementation of efficacious interventions to encourage the use of screening have increased in recent years. This study addressed gaps in the dissemination and implementation of evidence-based interventions with a pilot called Team Up. Qualitative interviews with 24 key individuals in six state-level partnerships explored partnership characteristics that influenced selection and use of evidence-based interventions among low-income, rarely or never screened women. Guided by diffusion of innovations theory and the Lasker and Weiss partnership functioning model, interviews about the intervention centered on (a) knowledge surrounding evidence base; (b) identification, selection, and adoption; (c) planning and adaptation; (d) implementation; and (e) partnership reflections and impact. Using grounded theory and content analysis, data revealed that lack of communication and high partner turnover hindered adoption and adaptation, whereas failure of partnership leaders to engage local stakeholders and lack of sufficient funds hampered implementation. Delivery of evidence-based interventions was more effective when partnerships included local partners in early decision making and when coaches were introduced to facilitate strategic thinking about translating evidence-based interventions into practice. A challenge for public health partnerships was the translation of interventions into successful programs, such that underserved communities benefited from early detection intervention research.


Asunto(s)
Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/prevención & control , Promoción de la Salud/organización & administración , Pobreza , Práctica de Salud Pública , Comunicación , Toma de Decisiones , Detección Precoz del Cáncer/métodos , Medicina Basada en la Evidencia , Femenino , Humanos , Difusión de la Información , Relaciones Interinstitucionales , Gobierno Local
10.
J Rural Health ; 40(1): 114-120, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37389421

RESUMEN

PURPOSE: The proportion of cancer patients who participate in clinical trials (CTs) remains low, despite an understanding of barriers to enrollment. The barrier of rural residence is relevant to Veterans, who more commonly live in rural areas than non-Veterans. In this exploratory study, we aimed to examine geographic factors that could impede CT enrollment and to improve access to CTs for Veterans. METHODS: To assess the influence of rurality on the availability of CTs, we performed simulated searches using The Leukemia & Lymphoma Society's Clinical Trial Support Center (LLS CTSC) database. The LLS CTSC provides free CT education and navigation. In the second part of this study, we offered Veterans with blood cancers who received care at the Durham, Salem, Clarksburg, Sioux Falls, and Houston Veterans Administration (VA) Medical Centers referral to the LLS CTSC. FINDINGS: In simulated searches, we found significantly lower numbers of CTs open to enrollment in rural areas, compared to urban areas. In actual referrals, 33 Veterans were referred to the LLS CTSC, of which 15 (45%) lived in rural areas. Three Veterans enrolled in CTs. Patients declined referral or did not enroll in CTs for various reasons, including a desire to maintain care within the VA and/or to initiate therapy quickly. CONCLUSIONS: We identified "clinical trial deserts," which might hinder access and reduce CT participation for rural Veterans. Referral to the LLS CTSC promoted CT education and enrollment among a highly rural cohort of Veterans receiving care in the VA system.


Asunto(s)
Neoplasias Hematológicas , Veteranos , Humanos , Población Rural , Estados Unidos , United States Department of Veterans Affairs , Ensayos Clínicos como Asunto
11.
Cancer Med ; 13(10): e7298, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38770644

RESUMEN

INTRODUCTION: Despite the importance of clinical trial participation among cancer patients, few participate-and even fewer patients from ethnic and racial minoritized groups. It is unclear whether suggested approaches to increase accrual are successful. We conducted a scoping review to identify evidence-based approaches to increase participation in cancer treatment clinical trials that demonstrated clear increases in accrual. Notably, more stringent than other published reviews, only those studies with comparison data to measure a difference in accrual rates were included. METHODS: We searched PubMed/MEDLINE, Embase, CINAHL, and Web of Science for English-language articles published from January 1, 2012, to August 8, 2022. Studies were included if they were conducted in the United States, described single or multicomponent interventions, and provided data to measure accrual relative to baseline levels or that compared accrual rates with other interventions. RESULTS: Sixteen articles were included: six with interventions addressing patient barriers, two addressing provider barriers, seven describing institutional change, and one describing policy change. Key themes emerged, such as a focus on patient education, cultural competency, and building the capacity of clinics. Few studies provide comparative accrual data, making it difficult to identify with certainty any effective, evidence-based approaches for increasing accrual. Some patient- and system-level interventions studies showed modest increases in accrual primarily through pre-post measurement. CONCLUSION: Despite an extensive body of literature about the barriers that impede cancer treatment trial accrual, along with numerous recommendations for how to overcome these barriers, results reveal surprisingly little evidence published in the last 10 years on interventions that increase accrual relative to baseline levels or compared with other interventions. As clinical trials are a primary vehicle through which we improve cancer care, it is critical that evidence-based approaches are used to inform all efforts to increase accrual. Strategies for increasing participation in cancer clinical trials must be developed and rigorously evaluated so that these strategies can be disseminated, participation in trials can increase and become more equitable, and trial results can become more generalizable.


Asunto(s)
Ensayos Clínicos como Asunto , Neoplasias , Selección de Paciente , Humanos , Neoplasias/terapia , Participación del Paciente
12.
J Cancer Surviv ; 2023 Jul 07.
Artículo en Inglés | MEDLINE | ID: mdl-37420150

RESUMEN

PURPOSE: Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum. METHODS: We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences. RESULTS: Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried). CONCLUSIONS: Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions. IMPLICATIONS FOR CANCER SURVIVORS: Tailored supportive resources are needed for caregivers throughout survivorship transitions.

13.
Fam Syst Health ; 41(2): 140-148, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36222643

RESUMEN

INTRODUCTION: An older parent's blood cancer diagnosis impacts the entire family system, including adult siblings, an often overlooked subsystem of the family. Yet, adult siblings are typically involved in their parents' care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development. METHOD: Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semistructured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method. RESULTS: Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping). DISCUSSION: Findings illustrate how a parent's blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Asunto(s)
Neoplasias Hematológicas , Hermanos , Adulto , Humanos , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Padres , Adaptación Psicológica , Hijos Adultos , Cuidadores
14.
JCO Oncol Pract ; 19(2): e167-e175, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36351207

RESUMEN

PURPOSE: Patients with and survivors of hematologic malignancies are particularly vulnerable to COVID-19 disease and complications. This study examined patients' vaccination attitudes and behaviors and their correlates. METHODS: A two-wave survey was fielded in December 2020 and June 2021 among hematologic malignancy patients and survivors (N = 2,272). Demographic characteristics, intent to get vaccinated, vaccination status, attitudes toward vaccination, and level of trust in specific sources of information about COVID-19 vaccines were assessed. Descriptive statistics were calculated, and linear probability models were estimated to examine binary outcomes and their correlates. RESULTS: In December 2020, before COVID-19 vaccines were available, 73% stated they were likely or very likely to get vaccinated if an FDA-approved vaccine became available; however, in June 2021 over 90% reported being vaccinated. Being younger, unmarried, trusting local faith leaders, and not having a bachelor's degree or more were negatively associated with getting vaccinated. Among those hesitant in December 2020, those who expressed a distrust of vaccines in general were least likely to get vaccinated. Being vaccinated in June 2021 was positively associated with the degree to which respondents trust their oncologist, federal agencies, and pharmaceutical companies. Oncologists and primary care physicians were reported as the most trusted sources for information about vaccines. DISCUSSION: COVID-19 vaccine hesitancy remains a public policy concern even now, as additional boosters are recommended among vulnerable populations. Our findings suggest that patient trust in their treating physicians can play a critical role in promoting individual patient and public health goals.


Asunto(s)
COVID-19 , Neoplasias Hematológicas , Humanos , Vacunas contra la COVID-19/uso terapéutico , COVID-19/complicaciones , COVID-19/epidemiología , COVID-19/prevención & control , Confianza , Sobrevivientes , Neoplasias Hematológicas/complicaciones , Neoplasias Hematológicas/terapia
15.
Cancers (Basel) ; 15(12)2023 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-37370787

RESUMEN

Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.

16.
PEC Innov ; 3: 100198, 2023 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-37662692

RESUMEN

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors. Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

17.
J Clin Med ; 12(4)2023 Feb 18.
Artículo en Inglés | MEDLINE | ID: mdl-36836183

RESUMEN

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management-a role that has been heightened during the COVID-19 pandemic given the healthcare system's reliance on frontline family caregivers and CLL patients' increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn't work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.

18.
J Cancer Educ ; 27(1): 67-74, 2012 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-21938600

RESUMEN

Only 3% of cancer patients participate in cancer clinical trials (CCTs). A number of barriers to participation, particularly for minority groups, can be addressed through community-focused education and advocacy efforts. Working with community partnerships, a pilot program sought to change knowledge, attitudes, and role behaviors among community leaders, primary care providers (PCPs), and clinical researchers about CCTs, to increase patient awareness of and participation in CCTs. A mixed method evaluation utilized quantitative analysis of surveys administered to participants during the program period (2006-2008) and qualitative data from interviews with key participants. Programmatic efforts were effective in increasing knowledge and training community leaders and PCPs to disseminate messages about clinical trials, and ultimately increasing patient inquiries about local trials. Training improved cultural competency skills among clinical researchers to recruit and retain CCT participants. Partnerships fostered new processes and structures to facilitate CCT participation in their communities. Clinical trials education and advocacy efforts through community partnerships have an important role in enhancing clinical trial access and in increasing clinical trial participation. Oncologists' involvement in and leadership of such partnerships are critical to promoting CCT accrual, particularly for minority groups.


Asunto(s)
Ensayos Clínicos como Asunto/estadística & datos numéricos , Investigación Participativa Basada en la Comunidad , Defensa del Consumidor , Neoplasias/prevención & control , Educación del Paciente como Asunto , Selección de Paciente , Médicos de Atención Primaria/educación , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Participación del Paciente , Proyectos Piloto , Proyectos de Investigación
19.
Am J Community Psychol ; 50(3-4): 497-517, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-22618023

RESUMEN

Dissemination efforts must optimize interventions for new settings and populations. As such, dissemination research should incorporate principles of quality improvement. Comprehensive Dynamic Trial (CDT) designs examine how information gained during dissemination may be used to modify interventions and improve performance. Although CDT may offer distinct advantages over static designs, organizing the many necessary roles and activities is a significant challenge. In this article, we discuss use of the Interactive Systems Framework for Dissemination and Implementation to systematically implement a CDT. Specifically, we describe "Bronx ACCESS", a program designed to disseminate evidence-based strategies to promote adherence to mammography guidelines. In Bronx ACCESS, the Intervention Delivery System will elicit information needed to adapt strategies to specific settings and circumstances. The Intervention Synthesis and Translation System will use this information to test changes to strategies through "embedded experiments". The Intervention Support System will build local capacities found to be necessary for intervention institutionalization. Simulation modeling will be used to integrate findings across systems. Results will inform on-going policy debate about interventions needed to promote population-level screening. More generally, this project is intended to advance understanding of research paradigms necessary to study dissemination.


Asunto(s)
Neoplasias de la Mama/diagnóstico , Redes Comunitarias , Detección Precoz del Cáncer/métodos , Práctica Clínica Basada en la Evidencia/educación , Difusión de la Información/métodos , Cooperación del Paciente , Mejoramiento de la Calidad , Práctica Clínica Basada en la Evidencia/métodos , Femenino , Humanos , Mamografía , Ciudad de Nueva York , Proyectos de Investigación
20.
J Prev Health Promot ; 3(3): 271-299, 2022 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38566802

RESUMEN

Low-income women of color receive fewer cancer screenings and have higher rates of depression, which can interfere with cancer screening participation. This study assessed the comparative effectiveness of two interventions for improving colorectal, breast, and cervical cancer screening participation and reducing depression among underserved women in Bronx, NY, with depression. This comparative effectiveness randomized controlled trial (RCT) with assessments at study entry, 6, and 12 months utilized an intent-to-treat statistical approach. Eligible women were aged 50 to 64, screened positive for depression, and were overdue for ≥ 1 cancer screening (colorectal, breast, and/or cervical). Participants were randomized to a collaborative depression care plus cancer screening intervention (CCI + PCM) or cancer screening intervention alone (PCM). Interventions were telephone-based, available in English or Spanish, delivered over 12 months, and facilitated by a skilled care manager. Cancer screening data were extracted from electronic health records. Depression was measured with a validated self-report instrument (PHQ-9). Seven hundred fifty seven women consented and were randomized (CCI + PCM, n = 378; PCM, n = 379). Analyses revealed statistically significant increases in up-to-date status for all three cancer screenings; depression improved in both intervention groups. There were no statistically significant differences between the interventions in improving cancer screening rates or reducing depression. CCI and PCM both improved breast, cervical, and colorectal cancer screening and depression in clinical settings in underserved communities; however, neither intervention showed an advantage in outcomes. Decisions about which approach to implement may depend on the nature of the practice and alignment of the interventions with other ongoing priorities and resources.

SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA